The Cost of Surviving Cancer

When most people think about cancer, they think about survival. What they don’t often consider is what survival costs.

I was diagnosed with head and neck cancer in 2012. Like many patients, my focus was simple: get through treatment, stay alive and hope life would eventually return to something resembling normal. I did not yet understand that cancer treatment does not always end when treatment ends—and that survivorship can carry lifelong physical, emotional and financial consequences.

Before my diagnosis, I worked full time and earned a strong salary with benefits and retirement contributions. After treatment, I was forced to leave my job. I received partial income for a limited period and was later pushed into early Social Security. What followed was not a temporary disruption, but a permanent shift in my life and finances.

When I later calculated the financial impact of survivorship, the numbers were staggering: more than $1 million in lost income, retirement contributions and growth, early Social Security–related losses, and out-of-pocket health insurance premiums over time.

But even that figure tells only part of the story.

These figures reflect only the losses I was able to calculate. They do not capture many additional out-of-pocket expenses—such as uncovered dental care, prosthetics, medications, nutrition and travel to specialists—that were never fully tracked. During and after treatment, my focus was on surviving—not on anticipating long-term dental damage or documenting every expense incurred along the way.

For head and neck cancer survivors, oral health is not optional or cosmetic. Chemotherapy and radiation permanently damage the mouth, teeth, jaw and salivary glands. Dry mouth, infections, exposed bone, tooth loss and difficulty eating or speaking are common. Managing these complications requires ongoing, specialized dental care—care that is often not covered by insurance.

While my surgeries and feeding tube were covered, the long-term consequences were not. I was fortunate to have a surgeon who was also a DMD and recognized emerging oral complications early. In later years, he helped guide me toward dental specialists familiar with the unique needs of head and neck cancer survivors. Even with that expertise, much of the care I required fell outside insurance coverage and became an ongoing financial burden.

Beyond the physical effects, the mental harm and permanent changes to my appearance created barriers to employment that made returning to work unrealistic—even if I had been medically able to do so. Survivorship changed how I looked, how I spoke and how I was perceived. It also affected my confidence, my social interactions and my sense of professional identity.

People often say, “You’re lucky to be alive.”What they don’t see is what was lost to get here.

My experience is not unique. Thousands of head and neck cancer survivors live with permanent oral damage, limited income and ongoing medical needs that fall outside traditional insurance coverage. Survival, for many of us, comes with a financial cost that never truly ends.

Survivorship should not mean a lifetime of uncovered medical care, financial instability or isolation. Yet until oral and dental health are recognized as essential components of cancer care, this remains the reality for far too many survivors.

The author is a head and neck cancer survivor and an advocate with Massachusetts Oncology Patients, Survivors and Supporters (MOPSS), where she works to raise awareness about the long-term oral health, financial and quality-of-life impacts of cancer treatment, including the need for medically necessary dental care.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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